Motivators

In everything we do we need motivators, we need to know in the end when we reach our goals, small and big, we get something for it. Motivators are a powerful thing to keep us striving to be the best that we can be. The trick is to find motivators that actually motivate you to keep going, to keep pushing and smash the boundaries. Motivators can be anything, I know for me they are things like, dinner in a fancy restaurant, a night away or a new piercing, but they can be anything like a new tattoo, new clothes or new jewellery. We use motivators for our kids because we know they work. Same principle applies with ourselves as adults. There are many motivators to chose from and for some of us involving others as a part of the motivators might just give that extra bit of determination you are looking for. The question is what motivates you?

Starting Again

Oh my, afraid to start again you say, what ever for? Starting again isn’t a bad thing it means change and I think that’s the bit most people are afraid of, CHANGE. Oh what a scary word, I say it like that because starting again means something pretty powerful. It means you have lived because you have tried something, failure or success is irrelevant at that point. Its giving you the opportunity to move forward in life, if finished something awesome or if you didn’t so what, you can change it for next time, with some luck no matter the outcome I hope you learnt something. You have accomplished something because you have been able to start again, either starting over or starting something new. There is many things in life that we need to start over from love, work, education, parenting and so much more. For the love of all things don’t fear starting again, life is an adventure if it nocks you down, pick yourself up and bloody get on with it. Do it again and again, its doesn’t matter how many times you start again its about starting again in the first place. Just make sure you getting closer and closer to what you are after achieving every time you do start again. Stay strong and stay true, to you and what you are chasing in life, that way starting again gives you hope and a drive to get you there and know that you can do it.

School Holidays

For  parents it is a love/hate relationship with school holidays. Although its nice to not have to get up to the alarm and having the kids home. It is not always rainbows and unicorns in our little slice of heaven. It can have more ups and downs than a roller coaster, from giggling happy kids to screaming melt downs and back again. The start of the holidays are always so full of hope and wonder about where your going to take them and all the things your going to do. By the end of the holidays its counting down the hours until they go back. Mid year holidays are always harder with the winter weather as more often than not they are stuck inside and need some form of entertainment. There is only so much you tube you as the parent can stand hear and only so much you want the kids watching. So as we are in our 2nd week of the winter holidays, from one parent to another, I say hold on for dear life, these days are not going to last forever. Hang in there, you are not alone, your not the only parent in this situation. Call up other parents and arrange those play dates. Do those picnics in the park, and if its raining do the picnic in the lounge. what ever you get up to just remember that once the holidays are over you might even miss them…………….

Comfort Zone

Everyone has a comfort zone, its where we feel safe and protected from things we don’t like or want to do. Its all to easy to get stuck in that comfort zone and hide behind the barriers that we put up ourselves to have what we think is a reason not to do something or a reason why we act a certain way. However lets face it quite often its an excuse and what we use to get out of something. We have all done it, we are all guilty of it, we’ve all said to ourselves we cant because it hurts, I don’t have enough time, money, its to cold, its to hot, I just ate, its to hard, I will tomorrow, whatever your reason is, was it true. Was it a real reason or was it just an excuse? I ask you this what is it that makes us hide in our comfort zone and not want to break out side of it. Isn’t time to be all you can be, don’t run, don’t hide, be loud, be proud stand up and tell them with no apologies that this is who I am and I can and will do this. Get out of that comfort zone, live your life and push those damn boundaries and if people or the boundaries push back then grit your teeth, dig your heals in, stand your bloody ground and fight. Fight the good fight for you and what you believe in. If you don’t then who is going to, for you, your future and humanity. Changing the world and making a difference starts with you. Stand up and get out of that comfort zone, this where things happen, nothing will change sitting and cruising along in the zone. It stops you from reaching for the stars, seeing the miracle and being spectacular.

Shane’s SGD – Speech Generated Device

For those who do and those who don’t know, my youngest Shane, 5 yrs old is Non Verbal Autistic with a moderate intellectual disability. Which in short means he can’t talk, we are lucky as he has 5 words under his belt, for him it is huge. Doesn’t mean he will or wont ever talk. So we use other forms of communication like Sign language and Pecs – Picture exchange communication system. However the next phase of communication for Shane is a Speech generated device. This was always on the cards but normally introduced to kids older than 5. As Shane was introduced to Pecs and Sign language early on it means he is ahead of where he should be to be able to use this type of device. Now to the device itself, we are currently in a 3 week trial phase from the company, set up through the speech therapist at his School, he attends Dandenong Valley SDS – Special Development School. A Private Speech therapist can also set these up for their clients. The key info is

  • 3 week trial
  • It is funded by the government
  • Cost $7,000
  • 9 month wait on funding
  • It uses Lamp words for life (this is the set up we are trialing)

The basic run down of the device is pretty simple and fast to use, it has to be for the kids  to be able to use them and function in normal society.  Basically its pictures on a screen that you choose from, then press the little man picture and it brings up the word and says that word as well. In short yes this will talk for him and say the words that he can’t. This will become his voice, there are many forms of speech generated devices out there and think the best reference to this is what the great late Stephen Hawking used.

“NO, NO, NO”

NO I am not stomping my feet and having a tantrum. One has the right to say NO, in fact we all have the right. Every man, woman and child has the right to say NO. It doesn’t matter your sex, your race or age you have the power to say NO. To stand up and say NO when we see something we don’t like. To say NO to being touched, abused, yelled at, bullied, sworn at or made to do something we don’t want to do. It is the most powerful word we have in our vocabulary. NO one has the right to try and take that power away from you. When was the last time you stood up and said NO? NO this is not on, NO you can’t do that, NO I am not going to do that. Could you imagine a world where NO had been said but hasn’t been heard? Oh wait…… for many people we are in that world. The kid who said NO to being bullied, the family who said NO to the violent or abusive partner and parent, the person who said NO to being raped, the person who said NO you can’t treat people that way, the person who said NO you can’t treat me that way. You used your power word but it wasn’t heard, and you are left questioning why? So many times the word NO is used and not heard, okay granted it is misunderstood and has been used in the wrong context or for the wrong reason at times. Many adults don’t understand how to use the word, let alone adolescents and children. How? as one person do you fix this universal problem. It’s called education, teach your kids, yourself and yes your peers as well. Teach them how to say NO, when to say NO, why to say NO, what to say NO to. We need to teach them that they can say NO, but most importantly how to listen to the word NO. We may not like the word NO, we may not want to hear the word NO but at the end of the day it’s too bad, we actually need the word NO. It gives us boundaries, mental, emotional and yes physical ones. Sometimes there are boundaries that just cannot be crossed. We need to get back to the old saying NO means NO. It doesn’t mean maybe, it doesn’t mean this time but not the next, it doesn’t mean to ask again to get a person to change their mind. We need to listen and except the word NO. The word NO is vitally important in this volatile world, NO is a power word for a reason.

ABA Therapy

ABA is short for Applied Behavioural Analysis Therapy. It’s an intensive intervention program used for kids who fall under the autism spectrum disorder category. The main aim of ABA is to obtain an understanding of the child’s behaviour and change that such behaviour. Being able to spot the negative and positive behaviours is critical in the success of the program and for the child to be able to learn and grow. This is because the program utilises the system of rewarding positive behaviour while changing the negative. It is not a therapy that is suitable for everyone, largely because of the type of therapy it is, how many hours in a week it runs for and the costs associated with it. A standard program commonly runs for 20 hours a week and is integrated into everything from home and school and after school activities. This is why there is such a large cost involved as it perform by an occupational therapist to be with the child and family for the full 20 hours. Like a lot of parents I have done the level one training so I can help the therapist and know that is expected of us and how to be able to keep up with what’s going on where my child is at.

For more information click on the link https://auaba.com.au/

Pecs

Pecs is short for Picture Exchange Communication Systems. It literally means that, it is where a person uses a picture in exchange for the item that is in the picture. It is an alternative form of communication that is used for a variety of disabilities. Some of these include but not exclusive, to speech impediments, non verbal autistic, deaf, ABI – Acquired brain injury and many more. It is a an enormous break through in communication for those able to use it. As a mum of Shane who is Non – Verbal Autistic it has helped us immensely in so many ways. It has lowered frustration levels for all of us as Shane is able to ask for what he wants. We as a family are able to know and understand what it is he asking rather than him standing there pointing in a general direction with us having to go item by item until we get the right one that he asking for. It is a game changer in regards to Shane’s confidence and personal growth. It has given him a voice and an opportunity to be heard. So i could keep up with the therapy and understand where he was at and what work needed doing i did the PECS level 1 training, which i have found to be invaluable in  being apart of Shane’s therapy and as an involved parent.

For more information click on the link https://pecsaustralia.com/

 

Reflections

As many of you know I had cancer and I am in remission. Many of you also know I had long thick luscious hair which 3 weeks into chemo treatments started falling out. Me being me, wouldn’t stand for it took charge and shaved my head. I was going to lose my hair, my way, when I wanted to, not when the disease told me I was going to. Now I don’t mind the big bald head look and thankfully I am able to pull it off, with or with out a hat. I never thought much about how different I must look until I met someone new who perceived me to be something I am not. Me being me laughed and thought it was hilarious what they thought of me. Then once I explained my situation and showed them photos of me with hair they were shocked at how different I look, there perception of me piercings and all changed. I didn’t think I looked that different until I looked at the photos together and damn now I see the difference.

School Days

As of this year I have both my kids at school, which for me is huge given my circumstances. My oldest Anthony has never been one for school and always hated it. My youngest Shane well given he is non verbal makes it difficult. I was apprehensive to say the least about both of them. With Shane being the way he is it meant that he is going to a disabled school not mainstream. Armed with this knowledge we had no other choice but for Anthony to change schools closer to Shane’s, I think the change of schools we were more worried about. However as per usual it turned out to be the best decision that we have ever made as a family. I say this because he has gone from attending sometimes one day a week to attending everyday and worried that he is going to miss a day. Shane well typical Shane has taken it in his stride and loves it. Warranted he won’t wear his school uniform unless his teacher puts it on him but as long as he is going I don’t care. As we say regularly in our house “pick your battles”.

 

Last Chemo

So on Thursday the 25th of January I had my last chemo treatment. It was terrifying and awesome all at the same time. Yes I was sick, I felt sick, I smelt sick. It was terrifying because of the unknown, the what next, although my cancer journey is not quite over it means it is drawing to a close rather rapidly. It means I can plan and start moving on with my life. When I first started treatment back in October it was that “ok I got this”. It will be over in January I kept telling myself but like most people you get half way through and it started to get tough. Knowing I was half way there made it hard because I just wanted it over, and now chemo is. So much of my life and my families lives have been consumed because of my cancer and my chemo. Now we get that time back. We can start living again, not having to worry about am I going to get sick, will I be too tired, how many people are going to be there and what germs will they have. Can I eat that food today, will it make me nauseous. All questions that every cancer patient has to think about every time they leave the house. Now i can start to live again!

Universal connections

Sometimes we meet and connect with people who are part of our lives for a day and others for a lifetime. We meet people because it is meant to be, for what ever reason making that connection feeling the impact of them even only for a short time is what you needed. Any kind of relationship is hard to navigate, so when you are given signs from the universe however big or small you need to take them. Ask yourselves, What was the last connection you made? What kind of impact to have on each other? How long was that connection? We’re you open to receiving the message that was sent to you? Making a connection is paramount to the survival of the human race, it is within these connections that we get the answers we are looking for. These connections and answers come from people you least expect to be apart of your life, but the impact on which one person can have on another in such a short time can be amazing. You never know the kind of impact or impression you are making on someone. It will come at a time when you least expect it. Question is are open to making these connections?

Non – Verbal Autism

Non – Verbal Autism, not words any parent wants to hear about their child. Honestly not words many people understand. My youngest Shane is 5 and he is Non – Verbal Autistic. Having a child with this changes everything you know and think you know about parenting. Knowing something is different with your child is one thing but having a diagnosis is a whole different ball game. Yes for us it made it easier because then we knew what we were dealing with and could get on with excepting and working on our new future. For me Shane was still the same, he hadn’t changed, how we deal with him and teach him life changed because it had to for him to be able to understand. There are many common misconceptions surrounding what Shane has, for example, he can make noises and sounds, which always shocks people as they believe there would be no sound coming out of him. As I have repeatedly told people he is not mute or deaf and has amazing hearing so yes he has some abilities. He can speak 5 words, then comes the question of but you said he is non verbal. This doesn’t mean no words at all, it can mean a few or for some a vocabulary base of 50+ words. Just because he is Non – Verbal doesn’t mean he is quiet. He has days where he is a typical noisy kid into mischief that i swear you could hear him from the street. Then other days you don’t even realise that a kid lives in my house and you could hear pin drop. I find people are often confused by Non-Verbal and what that means, it is different for everyone. We are lucky we live in a time where we have so many things available to us and new communication systems that we can utilise to teach Shane so he can one day be a functioning adult and with some luck a functioning member of society. Overall at the end of the day its his happyiness is what counts.

ASD

Autism spectrum disorder, what does this mean? It is now the term for all autistic disorders. It’s the main umbrella that all the different types of autism reside under. My 2 boys Anthony and Shane have ASD. What they were formally was Anthony had Aspergers and Shane had Non Verbal Autism among other things. They both are just kids with ASD which is ironic as they are on entirely different ends of the spectrum. The differences between them is astounding. Yet they are both classified as having the same thing. People often ask me 2 things and one is how we cope, how do I do it?As I have answered before, this is not about coping, you just do it. This wasn’t a choice, I did not chose to have 1 child with autism let alone 2. It’s not a conscious decision that you wake up one day think I wonder what it would be like to be a mum of 2 on the spectrum. Secondly I get asked what a normal day is like? This I laugh at because there is no such thing, I have no idea what a normal day is, no 2 days are the same. Just when you have it figured out for each kid on what there new thing is, it goes and changes. For me normal is not knowing if everything is going to turn to shit in a hell of a hurry. If we are dressed, fed and out the door then that’s normal, might have taken an hour and half one day and 20 mins the next but hey we are out the door. Like I tell people I don’t do normal!

Chemo

Chemo that dreaded word, you have your diagnosis and now its treatment time. Terrified is an understatement when you are faced with a treatment plan that you have heard about, possibly seen others go through but now you are faced with it. You hear stories about other people’s experiences with it and neither you or your doctor know how its going to effect you. How your body is going to react is very different from one person to the next. even on chemo this whole thing is still surreal for me as I am not text-book. Things my body should be doing on chemo it’s not and things my body shouldn’t be doing on chemo it is.                                                                                   No matter what the treatment plan is or the side effects keep it real. Don’t tell people you are fine when you’re not. Chemo is just as big a head game as it is a physical one. You are allowed to say stuff the world and hide for a day, you are allowed to give into your cravings and eat what you want. If there is ever a better time or greater need to listen to your body then it is now. If you need sleep, then sleep, if you have no energy to do anything then don’t. If you are hopped up on steroids and need to burn the energy then do so. No body can truly understand how good or bad you feel mentally, physically or emotionally. Remember to be gentle with yourself, don’t expect anything and take each day as it comes. I have good and bad days, from mentally and emotionally flat to physically jittery and not being able to sit still. The trick is to find a way to use it your advantage. Draw strength and inspirition from where ever you can get it. You are going to need to muster what ever inner strength you have to get through what will be the toughest thing you are going to go through.

We all have bad days!

Cancer Diagnosis

Nothing can prepare you for a cancer diagnosis, whether it’s quick out of the blue or a long drawn out process, either way it’s a shock. For me it was a real long drawn out process, it was a year of not knowing, a year of tests. Every time we thought this is it, this is the one, this the test that will give us an answer, we would go to the haematologist oncologist for the results and nope it was inconclusive. You become complacent and think ok we are not going to get an answer and when you finally do that’s a shock within itself. From dozens upon dozens of blood tests, 3 Pet scans and 5 biopsies later and all we could narrow it down to was yes its Lymphoma but what type came down to a 50 / 50 shot between non-Hodgkin and T-Cell Rich. However that didn’t mean it wasn’t another type that could be masking as something else. The biggest issue we had was that I had no symptoms it was found by pure accident when I had a CT on my back that I kept hurting. Even after a year and progression of the disease I still had no symptoms to speak of. So came the day we had to start treatment which made it difficult not having a definitive answer so we went with treating the worst case scenario out of our 50 / 50 shot which happened to be the T-Cell rich. Even now to look at me you wouldn’t say I am a typical cancer patient, even though I am receiving active chemo treatment. I have lost my hair like most cancer patients but I am also doing most of the same things. Waiting a year for an answer is rough but so is doing chemo. Starting chemo is just as overwhelming as the diagnosis itself. I will say this to any body at the beginning, middle or end of there cancer journey, whether your going through it as the patient or watching someone go through it, be kind to yourselves it’s not easy. The more answers you are given about your disease the more questions you have. Cancer changes you physically, mentally and emotionally, at the end of the day you are left with one question, what next?

Happy New Year

Happy new year to one and all, may 2018 be the best year yet with what ever you have planned. Remember to live, laugh, learn and play hard while making it a happy and safe one. It can be a truly great year that has endless possibilities so let’s get out there make it happen. Promise yourself to make it epic and seize the bloody day!

I know i will

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Didn’t go to plan……

Raising kids on the spectrum is never planned, I can’t say it is ever wanted by me or any parent. Nobody wakes up one day and says I want to raise kids that have issues, mental, physical or otherwise. This was never the dream for me or the thousands of parents out there raising kids like this. We all had the perfect life dream, but In reality the the perfect life, 2.5 kids with white picket fence, the dog and happy ever after didn’t go according to plan.

So we switch dreams, grieve the life we won’t have and move forward. Into a world of pure chaos and total order. Each day changes and we hope like hell that its going to be a good day. Each day we get up with a 50 -50 shot that our dream of a good day becomes a reality. When it does we thank the universe for a day that we can cherish. When it doesn’t, we hold on tight for we know by the end of the day we just want everyone to make it out alive.

It may sound grim but you can never be fully prepared to be a parent of any kind. Spectrum kids have great highs and extreme lows that no matter how long you have been existing in this world it can take you by surprise and knock you on your arse. Wondering where did that new thing come from, sometimes you really don’t see the subtle changes coming.

But at the end of the day the plan changed, the mother I thought I wanted to be and the mother I am changed. You know what happens to plan don’t you………